If you’re living with paroxysmal nocturnal hemoglobinuria (PNH), you may be considering various treatment options. One of these could be iron supplements, which health care professionals often suggested as supportive therapy. Supportive therapy involves medical treatments given alongside the main treatment to boost a person’s overall well-being, manage symptoms, and improve quality of life. This extra help, like iron supplements, aims to improve health and comfort while managing PNH.

PNH is a rare blood disorder causing low red blood cells (RBCs). In people with PNH, their RBCs break apart too soon, causing blood clots and problems with bone marrow. This article reviews how iron supplements may help people with PNH, the best way to take them, and possible risks of taking iron supplements.

Why Do People With PNH Take Iron Supplements?

Doctors sometimes recommend iron supplements to help manage symptoms of iron-deficiency anemia, a common complication of PNH. These supplements can help remedy the problem and relieve symptoms like fatigue and weakness.

Iron Is Vital

Iron is a mineral that your body needs to make hemoglobin — a protein found in RBCs that carries oxygen around your body. Your doctor may prescribe an iron supplement if you can’t get enough iron from your diet, have trouble absorbing iron, or lose too much iron.

PNH Can Cause Low Iron

In iron-deficiency anemia, a lack of iron causes low hemoglobin levels, resulting in a decreased number of RBCs in your blood. You might develop iron-deficiency anemia if you don’t get enough iron in your diet or lose too much iron.

If you have PNH, you may have low iron levels caused by losing too much iron. In PNH, a genetic flaw in your RBCs causes your immune system to attack them and break them apart (called hemolysis). The hemoglobin (and the iron in the hemoglobin) from the destroyed RBCs is lost in your urine.

Symptoms of Anemia

If you have PNH and anemia, you may experience the following symptoms:

• Fatigue
• Weakness
• Lightheadedness
• Dizziness
• Irritability
• Headaches
• Pale skin color
• Dyspnea (difficulty breathing)
• Heart problems

What Raises the Risk of Iron-Deficiency Anemia?

Additional risk factors for iron-deficiency anemia in people with PNH include:

• Menstruating — Blood loss during menstruation can increase the risk of anemia.
• Following a plant-based diet — Getting enough iron in your diet may be difficult for people who don’t eat meat.
• Having issues related to iron absorption — Celiac disease or a history of abdominal surgery are two examples.
• Donating blood frequently — Making regular blood donations can decrease your iron supply.

Talk to your health care provider about your risk factors for low iron. They can give you personalized advice to improve your well-being.

How Should You Take Iron?

If your iron levels are low, talk to your doctor about the best way for you to supplement. They may recommend that you increase your iron intake through your diet, use iron supplements, or both. The amount of iron you need every day depends on factors including your age and sex.

Increasing Iron in Your Diet

Your doctor may recommend that you increase the amount of iron you get through your diet. To achieve this, consider eating iron-rich foods including:

• Meat, including red meat, poultry, liver, and seafood
• Cereals fortified with iron
• Dark green, leafy vegetables such as spinach
• Legumes, including white beans, lentils, kidney beans, and peas
• Nuts and dried fruit
• Apples
• Dates

You can also help your body absorb more iron by eating foods with vitamin C at the same time that you eat iron-rich foods. Foods with high vitamin C include citrus fruits, tomatoes, berries, and green leafy vegetables. Additionally, it’s important to avoid eating foods high in calcium, like milk and yogurt, along with iron-rich foods because calcium can make it harder for your body to absorb iron.

Heme and Non-Heme Iron

There are two types of iron — heme iron and non-heme iron. Animal-based foods have both heme iron and non-heme iron, while plant-based foods contain only non-heme iron. In general, your body can absorb heme iron more easily than non-heme iron.

Ask your doctor for suggestions regarding iron-rich foods. Although the human body can absorb heme iron from animal-based foods more easily, eating too much meat is associated with other health risks. Too much red meat can increase your risk of heart disease, diabetes, and certain types of cancer.

Iron Supplements

There are many different types of iron supplements available as a prescription or over the counter. Talk to your doctor about the best type of iron supplement for you — and make sure to take it exactly as your doctor directs.

Iron supplements can differ based on a few characteristics, such as:

• Dosage form, including tablet, capsule, or liquid
• Type of iron, including ferrous sulfate, ferrous gluconate, or ferric citrate
• Amount of iron, which is how many many milligrams of iron each dose contains

To increase the amount of iron your body absorbs, it’s generally best to take iron supplements on an empty stomach, either one hour before a meal or two hours afterward. You can also talk to your doctor about taking your iron supplement with a vitamin C supplement or with vitamin C-rich foods or beverages, like orange juice.

Additionally, bear in mind that the U.S. Food and Drug Administration (FDA) does not regulate supplements as rigorously as it does medications. A product may contain more or less of a particular nutrient or have unexpected additives or contaminants. When purchasing supplements, look for verification from respected third-party testing agencies, such as ConsumerLab.com, NSF International, UL, or U.S. Pharmacopeia.

What Are the Risks of Iron Supplements?

Like all medications, iron supplements can cause side effects. They can also be harmful when the dose is too high or when taken with certain medications.

Side Effects of Iron Supplements

Common side effects of iron supplements include:

• Stomach upset or pain
• Nausea
• Constipation
• Diarrhea

If you take iron by mouth, it can also cause your stool to turn black, which is a normal sign to be aware of when taking supplements.

Excessive Iron

If your dose of iron is too high, it can lead to more serious side effects, such as inflammation of the lining of your stomach or stomach ulcers.

Iron supplements can be dangerous for young children who might take them accidentally. If you have children in your home, make sure all of your medications, including iron supplements, have childproof packaging and are kept out of reach.

Drug Interactions

Iron supplements might interact with some medications and make them less effective, including:

• Thyroid medications
• Parkinson’s disease medications
• Antibiotics
• Seizure medications

Heartburn medications and antacids with calcium can reduce the amount of acid in your stomach. Because iron is absorbed best with more stomach acid, these medications can decrease how well you absorb iron. If you take heartburn medications, ask your doctor when to take them.

Talk to your doctor or pharmacist about how to manage drug interactions. You may have to take your iron supplement at a different time from certain medications to avoid problems.

Can Iron Interact with PNH Treatments?

Iron doesn’t usually interact with any PNH treatment options. However, some PNH treatments can increase the amount of iron in your body. If you’re also taking iron supplements, this could lead to iron overload — that is, too much iron in your body, which can cause organ damage.

Complement Inhibitors

Complement inhibitors are relatively new treatments approved by the FDA to treat PNH. These medications work by blocking immune system proteins known as complement from destroying your RBCs. As a result, a person taking these medications will lose less iron.

Examples of complement inhibitors include:

• Eculizumab (Soliris)
• Ravulizumab (Ultomiris)
• Pegcetacoplan (Empaveli)

Iron supplements might interact with complement inhibitors by causing iron overload. If you start treatment with a complement inhibitor, your doctor may stop your iron supplements once your iron levels are normal.

Blood Transfusions

If you have low blood cell counts due to PNH, you may receive a blood transfusion. During this procedure, parts of blood from a donor are put into your bloodstream. This step can help increase your blood cell counts and improve your symptoms. While this is a safe and common procedure, keep in mind that a possible complication of this procedure is iron overload.

Make sure to talk to your doctor about all medications you take, including all prescriptions, over-the-counter medications, and vitamins and supplements — including iron supplements — before you receive any new treatment or medication.

Talk With Others Who Understand

On myPNHteam — the social network for people with paroxysmal nocturnal hemoglobinuria and their loved ones — members come together to ask questions, give advice, and share their stories with others who understand life with PNH.

Do you take iron supplements? What type works best for you? Share your experience in the comments below, or start a conversation by posting on your Activities page.